Use It OR Lose It
Ataxia is a Greek word for “Lack of Order”. Our mission is to bring some order with Ataxia awareness.
As part of the Ataxia Aware project, we are sharing personal accounts of those with Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experience with disability, whether themselves or someone close to them.
About Me:
My name is Jeremy, and I was born in March 1977.
My Early Years:
As a toddler, I was seen as different/special, because Ataxia wasn’t known. I remember being tested with a cap on my head with little probes; I guess this was testing my brain’s neurological function.
As I got older, probably four to seven years old, I remember having some scooter that I would kneel on, going down ramps.
My Experience at School:
I continued growing up as a normal kid, never knowing that I had any kind of disability or was special.
I played sports, baseball, and basketball, and did many activities, was even in the Boy Scouts and became an Eagle Scout.
Sometime in junior high, I guess I walked differently, and so I believe that’s why they gave me the nickname, Boner. At the time, Growing Pains (a TV show) was popular, and there was a character on there called Boner. I didn’t know that it was because I walked differently or had a disability, because my family never told me.
Throughout junior high and high school, this nickname stuck. I guess I thought it was cool, and it kind of led me to think I was popular, even though in reality, they were making fun of me because I walked differently.
Why I Decided to Push for a Diagnosis:
I worked and had a city job from 2001 to 2025 of June.
It was in 2014 that at my job, I read an article about the sequence diagnostic testing. I was getting worse, falling and stumbling, so I went to my doctor with that article, and he suggested I go to UCLA Health and be tested.
I had a son in 2009 who was born with no symptoms of what I had, but that’s another reason why I got tested. I wanted to make sure that he would be okay, or I could be used as the guinea pig to fix whatever was wrong with me, so that he would not have to go through life the way I did.
My results came back that I had ARSACS (Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay).
Work and the Struggle of Receiving Benefits:
I still worked for the city of La Mirada, California, but worked instead as a maintenance worker. In 2021, COVID came, and my job required me to go to a workers’ compensation doctor to get assessed for things that I could and couldn’t do.
I began using a cane because my balance was off. I also used a walker at work for liability reasons.
I started working a second job at Knott’s Berry Farm because the city job I had as a part-timer didn’t pay into Social Security. Eventually, in March 2025, I quit my city job for this reason.
In June 2025, I left the farm, too. This meant that I haven’t qualified for SSDI, which is Social Security Disability Insurance. It is a U.S federal program that provides financial assistance to those with a long-term disability who are unable to work. I’m therefore looking for another year of work, so I qualify for the insurance.
“It Feels Like I’m Discriminated Against”
I’ve been applying to almost 300 jobs since the Farm let me go. Just trying for customer service, call centre work or something involving helping people.
My Zoom or over-the-phone interviews come out great, and I feel that I have a real chance. But unfortunately, when I have to go in person for an interview, it feels like I’m discriminated against because I never get a call back or told anything. I’m left hanging and don’t get the job, which is very discouraging and hard.
Use It Or Lose It:
I currently stay active by riding my recumbent bike or going to the gym. Although I have to use a walker full-time, I try to exercise as much as possible because I have the mentality of use it or lose it.
I work out my lower body in the gym, especially my toothpick legs with no muscle.
I am currently still able to drive.
My Life Now and What I Wish Had Been Different:
I try to always keep a smile and a positive attitude.
I go to church, praying and hoping that God will help me with my disease and find a purpose in my life.
I have never been married, although I do have a soon-to-be 17-year-old child in July.
I was always shy as a kid, but lately I’m not as shy and speak out to people when I feel gawked at or looked at, feeling judged, not knowing I have a disease that I’ve had my whole life.
Sometimes I wish my family had told me that I was special or different so that I could have had a normal job paying into Social Security. But I keep fighting against my disease by working out and staying active.
I hope it inspires other Ataxians, and that’s what I live for: to help others.
God bless; I hope this story helps. Thank you for reading.
Written by: Jeremy Hume
Edited by: Meg Elmer
We would like to thank Jeremy for sharing his inspirational story with us. If you would also like to get involved and share your experience with Ataxia or another rare condition, please get in contact with us through our social media channels or our email.
If you would like to know more about Jeremy, you can follow his Instagram page @jeremyhume9019